Sile O’Modhrain is an Associates Professor of Performing Arts Technology at the University of Michigan – Ann Arbor. “Her research focus is on haptics-touch and gesture-and its relationship to music performance and on the development of new interfaces for technology-enhanced instruments that extend the boundaries of musical expression.”

Sile was born in Ireland. She earned her Ph.D in computer based music theory at Stanford University. She then worked as a researcher and faculty member at MIT. She also worked for BBC Radio as an audio engineer and program producer. Sile has Leber’s congentital amaurosis, which leaves her with “perception of light, but no real useful vision”. I recently sat down and spoke with Sile in Ann Arbor, Michigan.

She explained to me what her condition is:

“It looks like retinitis pigmentosa because what happens, your central optic nerve doesn’t develop properly. Therefore your retina isn’t being used. The process of refreshing chemicals in the retina atrophies and eventually your retina looks like the retina of someone with retinitis pigmentosa because the pigment starts to go away. I’m often drawn in for medical students because it’s a real trip. They think it’s RP and they forget to ask one or two questions which would reveal that it isn’t. They often use me as a mean person for exams.

It’s not primary retinal disease, it’s just a malfunction of the development of the optic nerve. It turns out to be one of the conditions that they can correct with genetic therapy now. If they find the condition soon enough they can correct it in a child. Before they’re two or three they can completely reverse the condition. That’s been fairly recent.”

How do you read your e-mail? How does that all work? JAWS (Screen Reading Software?

Sile: The equivalent actually, “Window Eyes”, but it’s the same thing. They’re a competitor to JAWS. I think they’re slightly losing their ranks right now.

Mike Walsh: JAWS is winning?

Sile: JAWS has a bigger user base because it was put on computers for government employees. It’s got a greater foothold. I think at the moment they’re slightly ahead in terms of what they can do. Then sometimes Window Eyes will leap frog it…

Mike: It’s a technology battle, that’s good.

Sile: The web is still becoming a bit of a pain now though because of dynamic content, neither of them seem to deal with very well. Mike: What do you mean by dynamic content?

Sile: If you have a scrolling feed on a webpage or an applet sitting within a frame, the screen readers just collapse. It’s like, “Can’t cope.”

Mike Walsh:Do you use [Facebook]?

Sile: I use Facebook. I tend to use it through apps, that removes a lot of that content.

Mike: What is your profession?

Sile: I design and build new digital musical instruments. I started out in sound engineering. I worked for the BBC for some time. I then applied for a scholarship and ended up coming to the states to get my PhD. I went to the Computer Music Center at Stanford, it’s called CCRMA. Then I worked for MIT. Still working between computers and music. That’s really the area I’ve stayed in.

My current appointment here is half in the school of music and half in the school of information, which is where human-computer interaction happens. Really I suppose I do human-computer interaction but with a flavor of music.

I brought up a recent grant three professors from Western Michigan won from the National Institute of Health to research and redevelop the white cane. Sile shared with me about a techy cane she has:

Sile: I have a cane that was developed by some people in France about eight or nine years ago that has a distance sensor. It’s good for sensing things which are not on the ground like obstacles that are at head height or that are far away. It gives you vibra tactile feedback about whether it thinks there’s an obstacle in the path that you’re about to travel.

Mike Walsh: Does it vibrate your hand?

Sile: It does. The problem is that there’s so much information coming through the cane anyway about things like surfaces, but those subtle tactile cues that you’re picking up from the ground are actually really useful. This masks them a bit and confuses them. You’re superimposing two forms of tactile feedback (including vibration). It’s useful but it definitely hides, it masks some useful information. That’s not to say somebody couldn’t find a way around it

Mike: Are senses heightened… If you lose one sense (sight) is your hearing heightened?

Sile: I think you use it differently. I used to have this argument with my training manager when I worked at BBC. He said, “No, if I look at the profile of your hearing,” … it’s the same as everybody else’s. We came to the conclusion… that I use different cues in the environment and I’m attuned to different signals, The interesting thing about touch is that’s slightly different. If you’re a braille reader or actually if you happen to play a musical instrument, even though you’re not blind, your tactile acuity doesn’t degrade at the same speed as that of people in general. It’s like a use it or lose it thing.

[People who] play musical instruments or people who read braille, or… other very fine motor tasks, keep their tactile acuity much later in life than [other] people in general. That’s an interesting thing. It doesn’t seem to work with hearing. I guess there’s some basic physiological stuff that happens as you grow older with hearing.

Mike: What are some challenges that you’ve come across and how have you overcome them?

Sile: The kind of things that are challenging and will continue to be challenging are really stupid things. I happened to hear, on the BBC a fragment of a program. It was a blind guy, he’d lost his sight, and he was talking about the fact that he was in London and he had an early appointment then he had an appointment later in the day. He’s like, “I’ll just hang out.” Then it suddenly occurred to him that hanging out was actually quite hard. Anytime you wander around, [you] amble into shops, go and get a coffee, or pick up a newspaper. As a blind person unless you know an area really well, it’s not something you can easily do. That’s challenging, silly little things like.

Mike: Whenever you’re in a rush is it more challenging?

Sile: Yeah, random people getting in the way… not being able to drive in Michigan in winter is a real pain, and the fact that when you move from place to place support systems are quite different.

Mike: Yeah, all the places you’ve been, different kinds of support systems I bet.

Sile: Here in Michigan it’s funny. What I do when I arrive in a new place when I’m living there is to have some training on the routes that I’m going to need most immediately. I’m reasonably quick at picking things up so I don’t need a huge amount of training. Michigan really was mean about it. We spent ages while I was sitting here — waiting to be trained — deciding how much training they were going to give me. That was a whole process that delayed me. I’m like, “C’mon guys, I’m actually here working already”.

When that period had passed, let’s say it was like six months that they eventually settled on. I got a form in the letter from Rick Snyder telling me that I had been rehabilitated. I still haven’t decided how I feel about that but I would like to go and say, “What does it mean to have a lifelong disability and be told you’ve been rehabilitated?” That’s weird. That was kind of insulting.

Mike Walsh: What opinions do you have about ADA (Americans with Disabilities Act)? You’re from Ireland, right?

Sile: I think ADA has been a really good thing. It came in America before it did in Europe. It forced Europe to comply. In the end I think Europe does a better job of compliance and of enforcing compliance, than America does, but if it hadn’t been for the ADA, the whole thing would never have really gotten organized. There wouldn’t be guidelines. There wouldn’t have been lots of things we now take for granted like buses that will come down so the wheelchairs can get on.. Simple things that are just so part of our lives now came out of ADA. Of course it’s a pain. It’s a pain for the average small business that needs to put in an accessible toilet or whatever and has to incur all that expense.

I think it’s more so in Europe. Europe is better at protecting disabled people, for instance in the workplace. To make sure you really do earn the same as your colleagues. I think that’s less so here. It’s much less even and you’ll still find that visually-impaired people in a comparable position still generally earn less than their sighted counterparts. That’s not really true in Europe because it can’t be. Europe is much more — in most countries, I won’t say all countries — but in Western Europe in particular is much better at taking that off the table altogether, it’s not even an option. If you can deliver the job then you need to get paid the same.

I don’t think it’s the case here… there’s some really cool things in Japan. I guess they had a lot of blind veterans who came back after the Second World War. There put a lot of really interesting things in place. The whole subway system has tactile markings running throughout it, where you can get on this little tactile road and it brings you through a subway station, then it brings you to the ticket office and then the escalator.

Then if you keep following it you’ll end up at the platform right where a train will stop and the door will open. It’s so fast. It’s as mindless, probably, as commuting for somebody who can see. Well, I can’t imagine that would ever happen in America, and it probably is only true in places like Tokyo and major cities.

Mike: … that came out of servicemen being blind?

Sile: I think that’s what motivated it but they really did adapt. Every sidewalk in this city, pretty much, has these yellow things going along it.

Mike: The bumps?

Sile: Yeah, they’re like little tracks. If you stay on them, they pretty much guarantee you’ll be safe [from] any overhanging stuff… Japanese people really understand that you can’t put things on those lines…

Mike: … going back to music… Do you have any artists that you like that are flying under the radar? Who are your favorites? Do you have a favorite style?

Sile: I’ve gotten back into some Motown and related kind of stuff… Muscle Shoals (movie), it’s about this amazing studio that existed because of one person in Alabama. It started, I think in the ’50s, I could be wrong there. It ran right up and through the ’80s. The guy who run it whose name now escapes me, he seemed to have an unerring talent for hits, almost regardless of genre. It was amazing, you have to see it…. That’s gotten me back into a bit of a Motown groove and related things…. Then of course I listen to classical music and jazz and all sorts of stuff… I was listening to Django Reinhardt today. I listened to Josh Bell’s recording of the Bach partitas for a while.

Mike: I know it’s a loaded question.

Sile: For a musician it’s like, “Oh my God!”

Mike: [What are] favorite places you’ve been. What do you enjoy when you travel?

Sile: I like walking or running. I started doing some long distance running quite recently with guides. I’ve done a couple of city races like 10Ks and one half marathon. What I like about that is you get to a city and it’s closed down and you get to run through the streets of the city, like Madrid… You get this real feel for the city that’s impossible to get in any other way because it’s just so visceral…. and you just run in the roads. In Barcelona we ran… through really amazing parts of the city. That’s really cool. A very tangible feel of the city.

I grew up on a farm, and I’ve rode horses all my life, so I’ve done a couple of horseback riding holidays. One of those was in Banff National Park. That was amazing. Banff in Canada, it’s where it’s a big skiing resort area in winter, but the national park there is stunning. I’ve done horseback riding holidays, where there’s one that is a week long and you ride into the park. There are no vehicles really allowed in the park so everything you bring in with you has to be packed in on mules. You ride from one lodge to another and stay overnight. It’s just really amazing way to explore country that is hard for visually-impaired people to access by foot, even though you could hike. Even hikers would say they wouldn’t cover the distance that you could cover on a horse.

Mike: Any places on your radar?

Sile: I want to go to Australia and New Zealand. I’ve been promising to do that for years. I’ve got friends and relatives out there and I just need to do it. Slightly scared of the fact that there are so many poisonous animals in Australia…. I love the west coast, I lived near San Francisco for six years…. in Palo Alto… That is probably one of my favorite places… Have you gotten into tandem biking yet?

Mike: No, not yet… funny you say that. Actually I rented a bike to go across the Golden Gate Bridge a couple of weeks ago, a week ago. I was like, “This is going to be one of the last times, perhaps if things keep going …”

Sile: No you should go tandem biking. The thing about tandems is if you’re fit and you’ve got a good bike you can outpace anyone on a tandem because you’ve got all that power.

Mike Walsh: You have to be in the back, essentially?

Sile: Oh yeah. You’re the engine basically.

Mike:Yeah, it’s hard. I’ve been a biker my whole life.

Sile: You’re going to have to give up your power.

Mike: [Giving up] Driving has been fine. It’s like, “Oh, get a ride. Public transportation, fine.” Driving was, as you adjust, it’s so slow. By the time I stopped driving I was relieved. I was like, “Okay, I can’t do it.” You’re relieved. Then you forget, “Oh, it was nice to be able to go somewhere.”

Sile: That is annoying, when you go back to things that are frustrating, like you want to go down the store for something. Oh man, that’s not easy.

Mike: You have to plan your life.

Sile: Well yeah, you have to be more organized. If you forget something you just forget it. Amazon and things like that are great. You can buy a lot of stuff online now, that’s useful.

Mike: What are some habits that you have? (that can help other visually impaired people)

Sile: … figure out anywhere locally [that] delivers. It’s not that you’d have to use the service all the time but it’s great to know as a backup. I’ve used it here in the winter. In the summer I can walk to the grocery store. If friends are around I can ask them if they’re going and I’ll go. It’s great to be able to ask friends but you should really have a plan B. You might necessarily not always want to be bothering people.

It’s really nice if people can help you but it’s always good to have a way of doing at least the basics things on your own. It might be harder. Of course it’s great if somebody came come along with a car and you just go in and get your shopping, it’s brilliant, it’s so quick. At least if nobody can come or if somebody was going to bring you and they can’t come at the last minute you’re not completely stuck. That’s always good, having a plan B. It is a lot about thinking differently, I think, being organized. You’ve traveled on your own for this trip, right?… Have you had to use assist at all in airports?

Mike: I’ve used them, yeah. I have my cane and people are very receptive, like, “Go in this line.” There are times when I feel like I’m taking advantage but then it is a little bit slower for me. I’m helping other people by using this line and going in the shorter line.

Sile: Eventually if you lose your sight completely and you turn up at an airport on your own what you’ll have to do is use the wheelchair service. You’ll have a hard time convincing them not to put you in a wheelchair. That is really annoying. They will do a meet and assist. You just have to think about your airport trip. You’re not going to go to a shop in the airport. You’d probably have to beg them to get [you] food. It’s not automatic that they think of these things. Being ready to hold your own, and when you’re traveling always bringing food, even Clif bars or something so that you never get left. The annoying thing since all of the 9/11 stuff is not having water…

If I could do anything it’s to make TSA give disabled people back water if they take the water from them. They don’t realize how hard it is, you can’t just go and get it if you’re in a wheelchair or left stranded. That happened to me the other day. I was four, nearly five hours by the time my flight was delayed and I had no water. Just because the flight was bumpy the cart didn’t get to me and I never got it. I was so thirsty by the time I got home. Things like that, you can get caught in traps like that.

Mike: Interesting. You mentioned Palo Alto and [I was] just out there. It’s fascinating, now everything can be delivered to you, everything. There’s a service for smoothie delivery now.

Sile: Probably not here… We don’t even have Uber here…

Mike: Uber, how awesome [is it] when you’re in San Francisco or somewhere that has Uber. How much do you love being able to press a button, Uber, Lyft.

Sile: Oh my God, it’s brilliant. I lived in Belfast and then I lived here and I haven’t had Uber really. It wasn’t invented when I lived in Boston or San Francisco.

Mike: Is Uber something that you are able to see? You talked about shadows. Are you able to work with apps?

Sile: Yeah, I use VoiceOver on my phone… One annoyance that has cropped up is … Uber probably isn’t a problem but when apps update, sometimes the later version of an app … I don’t actually have Uber on here at the moment … the later version isn’t accessible. That just happened with the Weather Channel app. It used to be accessible, now it isn’t. What really did it for me is I bought a Nest, because I wanted to have access to the thermostat through my phone. That worked fine but then they upgraded and now I can’t use it anymore. I now have a useless thermostat. They upgraded it right in the middle of winter when it was minus 30, 40 degrees here. It was so frustrating. There are little gaps in technology, and I think especially as visually impaired people start to rely more on their phones as the interface to their stuff, the Internet of Things — which is great, but somebody has got to start taking care of accessibility. It’s not just that your app is inaccessible, it’s parts of your house are no longer accessible. I can’t change my heating, I can’t do all these vital things in the real world that need to get done because somebody didn’t take care of the software issue.

Mike: Your phone… is that braille on your phone?

Sile: This is a useful thing. SpeedDots is the name of the company. They make these overlays for iPads, iPhones. It’s the keyboard, you see at the bottom? … Then just some random places on the phone where keys tend to pop up. The back and forward key, that’s the center of the thing. This tends to be the anchor points that are typically on the screen. They make a guess and give you the most critical ones. Even these dots for the keyboard are just amazing.

Mike: Who do you think I should go talk to?

Sile: You should go talk to Mike May. Mike May had quite a lot of his vision restored after surgery. He had detached retina, I think? Maybe it was glaucoma, I can’t actually actually remember off hand what his condition was but he lost his sight when he was about three.

I met him very shortly after he had surgery and he was starting to get some vision back. It would be really interesting to go and talk him. That would be one person. He has this company called Sendero that do GPS navigation systems that are on a lot of the accessible devices. He’s a really interesting guy…

I don’t know their name, but find the doctor who did that work on Lebers and did the earliest genetic interventions, just to talk about the whole process. What it’s like to discover something that eradicates a condition, can reverse a condition. That developed the gene therapy for lebers. It was in the new about two years ago I think. Lebers or LCA is the short form of the condition, the initials. They would be two good people… What about Erik Weihenmayer?

Mike Walsh: The climber?

Sile: Yeah.

Mike: He’s on my list.

Sile: Go get him… It would be interesting to find a blind person who is running a small business… any visually-impaired people who are just out there [at] that level trying to survive. I saw a chef somewhere who’s blind. He doesn’t run a restaurant, I think he runs a business. Some people have told me about this, they’ve been like, “How the heck does he do that?” Of course I cook but I couldn’t cook on that scale.

Things that are slightly below people’s radar that they would never imagine a blind person would do. I’m sure there are people out there doing it. Andrea Bocelli breeds horsing as well as singing… there are a lot of blind individuals who have horses and ride horses that hold tournaments. There’s a dressage event in the Olympics and all that kind of stuff. Somebody actually running a small business like a stables or something like that is cool too, out on a farm. Somebody living in Alaska, how the heck do they survive?

Mike Walsh:Blind person, Alaska, I don’t know how how you live in Alaska.

Sile: It costs … I was thinking of switching to JAWS but I have to be able to spend a thousand dollars to do it. I just don’t have that in my research budget right now. It’s frustrating because you pick up an iPhone, or an iPad — any “i” stuff, even the Apple TV. It comes with VoiceOver on it. You don’t have to do anything else, costs you nothing extra. It is accessible out of the box. You can switch over VoiceOver on Apple TV and navigate that whole infrastructure. Why on my PC do I have to pay an extra thousand dollars to have that functionality? That’s what’s really frustrating.

Mike: Props to Apple, right?

Sile: Well Apple was late into the accessibility game but when they go into it they said, “Right, we’re going to do it properly. We’re going to do it from the ground up, it’s not going to be an add-on.”

Mike: That’s good, they do everything very well.

Sile: It did take them an awfully long … And actually VoiceOver is good on mobile devices but still on desktop platform it leaves a lot to be desired. You can’t open Word or Adobe, it won’t read anything by a third party vendors. It’s still a heck of a lot better.

Mike: That’s good. Do you have any questions for me? I’m kind of through.

Sile: What are the things that you’ve noticed that have been the most surprising, in this journey that you’re on?

Mike: First thing is just people are incredibly nice. They go out of their way, or they’re just really interested in what I’m doing. They want to help out. I do everything through Facebook and Twitter so I’m fascinated how people will post it on their page. “Hey, I met this guy. You should help him out.” It’s heartwarming. It’s also embarrassing and everything. People send me messages saying it’s fun to see someone doing that. That’s a little overwhelming. People are … The human race, it’s incredible. Things that I’ve found out … I don’t know. I appreciate the vision I have. I’ve found that people adjust, and I’ve noticed that in myself.

Sile: You know, there are some really good people that I’d love to find out more about the kind of things they do. There are a bunch of teenage blind nerds who design accessible games, for instance. They seem like they’re shaping social media, and even technology, to make it work the way they need. Of course we all did it on the way up, what are they doing now?

… There’s an organization called BlindGamers.org. Find a blind kid who’s going to college to study computer science, who’s really active on social media, and go and interview them. Find out how their view of the world is different from even yours and definitely mine. When I was going to college all of us were stepping into the unknown. Now I feel that with social media that’s not the case, there’s this whole network that people have even before they go to college. …How has that changed, how is that whole vibe working out for visually-impaired people that are approaching this through technology.

Mike Walsh: You talk about your condition being rare. A network, like Facebook Groups allow your condition to be less rare, essentially. You can meet people, talk to people on there [with a shared condition]. I posted something before I came here and I’ve gotten probably eight responses already. It makes it less rare, essentially… That’s great.

Sile: I’m running a workshop in June, maybe in July, in London as part of the conference on new interfaces for musical expression, which happens every year. This year there’s a group in London that work with blind musicians and they’ve asked me to run a workshop on accessible technologies, or how you get into this field. It’s really interesting that when you don’t have time to update your skills and look at the current tools you don’t realize how fast the field has moved forward. I just have been realizing actually there’s quite a lot I can do now that I couldn’t even do five years ago in my own field. Not because anybody has really made an effort to make things accessible but just because they are, and they weren’t then. Because technology has improved, because Apple has built in accessibility to its computers so that anything that runs on a computer has to conform to that. By accident lots more things are more accessible than were before.

Mike: Are iMacs accessible? Do you think any Macbook they make is accessible?

Sile: In theory, yeah. It’s not as functional as something like the windows platforms but you can do e-mail and the web, and you can do basic sound processing using GarageBand and stuff like that. Even that five years ago was hard…

The best way to do accessibility is to have it on the back of a tool that everybody is buying. Of course there’s VoiceOver and then the phone, it gets some input from every phone that’s sold because part of the cost of that phone is covering all of the stuff that goes into it. You distribute the cost of making it accessible across all the users, not just across the disabled users.

Anything, any tool, any adaptive thing. If you can piggyback… on a general thing it’s going to be much more successful. It will be more regularly updated. Whereas if you go for specialist tools they may be more appropriate but they’re going to have all the downsides of having limited support. It’s a trade off, all of it’s a trade off. At the moment the trade off is going towards general accessibility and these things which is good I think.

At the end of the conversation I learned about a crowdsourcing app called “Tap Tap See” that describes pictures to help visually impaired people. Sile demonstrated by taking a picture of me and my friend, Soodeh, who was with me.

Sile: I’m waiting for a response… Sometimes it can be lucky, just sometimes … if they’re not awake, we can try forever.

Mike: Nobody likes my picture?

Machine: Picture one in men’s black ski jacket.

Sile: Men’s black ski jacket. I guess I just got your jacket. Sorry. I’ll try again. Let’s see if I can get it.

Machine: Take picture. Picture two in progress.

Sile: I have no idea what the viewfinder is seeing, so …

Machine: Picture 2 is woman sitting and smiling, holding a phone.

Sile: Yeah, someone out there got a picture and sent me back a description. It’s completely anonymous so they don’t know it’s me. It’s crowdsourced…. What’s really funny is, sometimes, say I have something I can’t remember, it’s a shirt or something… I take the same picture a couple of times and I get completely different descriptions, depending on who sends it back. I can always tell if it’s a guy or a woman, because a woman will tell you … say it’s a shirt. They’ll say, “It’s a blue shirt with a floral pattern on a such and such background.” A guy might say, “Shirt with flowers.”

What a great conversation! If you read through all of this… THANK YOU. I hope you learned something. A HUGE thank you goes out to Soodeh Montazeri for setting this up!

My interview with Katey Duppong, an entrepreneur who “sees” the humorous side of vision impairment.

Recently, I have become more active in Facebook Groups. It is a great way to create awareness about an issue or cause — in my case that’s a rare condition called Retinitis Pigmentasa (RP).

RP is an inherited, degenerative eye disease that can lead to severe vision impairment and even blindness. Through a group dedicated to RP, I met a woman named Katey Duppong from Kuna, Idaho. Like me, Katey has RP. I was instantly intrigued by Katey because she makes and sells funny t-shirts that shed light and humor on RP.

Katey is a busy woman. She is finishing up college and starting an early childhood learning center. She also has a small business selling products to support RP. She was kind enough to answer some questions for me. She deals with her condition head on; nothing scares her… well, so long as she cannot see it.

When were you diagnosed with RP?

All my life we’ve known that I’ve had RP, but I was “officially” diagnosed at age 15 (I’m 21 now). My mom and dad (who also has RP) first noticed that I showed signs of RP while waiting for a ride in Disneyland. I think I had just turned 5. He had asked me to go throw something away, and I couldn’t see where the trash can was (it was very dim lighting.) From that moment on we knew it was most likely RP.

What was that moment like?

“Officially” finding out that it was for sure RP was rough. At 15, all you can think about is “How am I supposed to go to dark school dances?” “How am I supposed to drive at night/drive in general?” “How am I going to see in class when the instructor turns out the lights?” “How am I supposed to go to parties with friends if I can’t see very well in their house?” Of course you can find alternate ways of handling these things, but it was a huge upset.

What stage are you at? Can you drive? Do you use a cane?

I’m honestly not sure what degree of vision I have left. I still drive periodically, but it’s only to places that have very few people around, and during the day. I have never driven at night. I live out in the country, so this is a plus! Very open, empty roads. If I lived in the city, it would be a completely different story, that’s for sure. As for the cane, I have one. Do I use it? No. I felt like it was a big step just purchasing one and having it in my possession. Baby steps

What inspired you to make the RP Truths t-shirts?

I was sitting on the couch one night, thinking “it’d be nice if I didn’t have to explain why I didn’t see someone’s hand to shake it … Like if they somehow would just know… ” I then created the idea of the t-shirt. Have a phrase (sarcastic or not), that would simply explain my vision. And then the seed was planted

Where do you get the phrases?

The phrases were all made up by my experiences (and my dad’s) with people around us. I remember one time in particular, my mom, dad and I were at a car lot. The salesman was probably the rudest man I’ve ever met. My dad had his cane out, and was talking to the guy. After leaving us for a brief time, he comes back, looks at my dad, and goes “so… you’re really blind?” I was shocked. Is this man serious? Is he really that negligent? Needless to say, he helped fuel my fire

Which phrases are the top sellers for all “RP Truths” items?

“It’s right there.” Doesn’t help.

I am visually impaired. No, I’m not faking it.

Do not walk in front of me, you will be run over.

“Are you blind?” Nope. I just like carrying this stick around.

Wet floor signs are, and will always be, the enemy.

How has the response been to the shirts?

The response has been outstanding! It’s great to see that so many people can relate!

What inspired you to give part of the proceeds to the Foundation Fighting Blindness (FFB)?

My parents have always given back to FFB, so it was a no-brainer. I strongly believe in the research that they do, and support finding a cure.

Who is someone with vision loss that inspires you?

Definitely my dad. I remember growing up, and not once questioning why he had “bad eyes” (as he says). I truly believe, the way my dad and my mom brought me up has helped me tremendously with the way I look at life. RP has never been a bad or horrible thing, it was just a condition in our family, and that was that. My dad always sung me a song from the band “Rush” called “Roll The Bones” and it’s main lyrics are:

Why are we here? Because we’re here, Roll the bones.

Why does it happen? Because it happens, Roll the bones.

Meaning, life gives you the cards you’re dealt. You can either take them and make the best of the hand you’ve got, or you can throw them on the table and quit. My dad is my superhero, and I don’t know what I would do without him. He is such a role model and one of the biggest influences in my life.

If you knew you were going to lose all of your sight, what would you want to see that you have not seen already?

The world. I dream of traveling to many places around the globe. I feel like there is so much to see, and so little time. RP is like a ticking time bomb… you never know when it’s going to go off. I never want to regret not seeing the world when I had the vision to.

How does your condition help you? Is there something you do exceptionally well because you have RP?

It’s funny. I actually have 50% hearing loss in my right ear, but can hear better than most people I know! I think having RP definitely heightens your other senses (even your intuition). RP has also allowed me to go with the flow of things. I can’t change what happens to my eyes, I can only adjust. Just keep swimming

What is the funniest moment you have had because of RP?

There are sooooo many. I’d have to say one of the funniest would be when I went to a haunted corn maze in high school. It was night time, and I clearly couldn’t see. We were all huddled together in a huge group walking. Everyone was screaming and saying “ahh he’s right next to you!!” Yeah… the most boring night of my life lol. I couldn’t see anything at all, so nothing scared me! As we were approaching a tunnel, one of the scary voices said “Are you scared yet?” Jokingly I said “Actually no… I can’t see anything…” He then lit up his face mask and screamed “How ‘bout now?!” I jumped like no other. Everyone started laughing, because I was finally scared.

What advice do you have for others who are dealing with RP?

It’s not easy to deal with. One minute you’re fine, and the next you feel like you can’t go on. But you have to. Life doesn’t stop. People don’t stop. Only you do. Keep going. You were given this condition for a reason. In my opinion it’s to teach others that life is a valuable thing, and it’s not to be taken for granted. We all have the power to change the world, so get to it

I recently visited Dallas, Texas. I was there to support my hometown Wisconsin Badgers who were in the Final Four. We left empty handed, but it was a great experience. I also had the chance to sit down and chat with a couple of great people from the Foundation Fighting Blindness. Jenny Lynn and Maria Cartagena work at the southwest chapter for the foundation.

Lynn stated, “Basically, the Foundation Fighting Blindness is an organization that exists to find treatments and cures for retinal degenerative diseases. That’s the blanket answer, but I think if you talked to our members, you would get a lot of different answers. Some of them [would say] the Foundation Fighting Blindness is my family… where I get support… where I met the doctor who finally clicked with me who knows what is going on with me. It’s a fun way to get involved, raise money and give back to a cause. There’s a lot of ways to answer that question.”

Maria is a great story. She was diagnosed with retinitis pigmentosa a couple of years ago. She is at a point where she can drive during the day and “secretly at night”. She bumps into things and constantly has a new bruise on her legs. Immediately upon diagnosis, she started researching and came across the Foundation Fighting Blindness. She began volunteering with the local chapter in Tampa, Florida. With a desire to be more involved and “see everything firsthand” she interviewed and took a job with the foundation. Eight months after her diagnosis she moved 1,100 miles to Plano, Texas to work for the largest retinal research organization in the country.

I asked them about challenges specific to people in the Dallas/Forth Worth area. One of the big challenges for those with vision issues in the area is how spread out it is. When they can’t drive they rely heavily on public transportation. The DART (Dallas Area Rapid Transit) system does not offer an easy connection to the various communities in the area. Google recently gave an update to their self-driving car. For those that can’t drive, this can’t come soon enough.

They also shared with me the latest news about the Argus II, which was recently approved by the FDA. It is a chip that is implanted on the retina. It then communicates to special glasses that the person wears. It is able to restore some visual function for people that are completely blind, which is a huge improvement.

I asked about misconceptions that people with vision issues deal with. Maria falls down and people think she is clumsy and/or impaired. She brought up a great point about how others have a hard time understanding those with vision issues: “It’s really hard for them to relate or understand when they can’t see it. If someone has a missing arm, they would probably be a little bit more sensitive versus they can’t see what you see, so they can’t relate.” Another common occurrence is when “someone goes to shake someone’s hand and their hand is below where their sight line is and they can’t see it”. This leads to people thinking they are being rude.

A highlight from the conversation was learning about a gentlemen with very little sight who has a yearly Oscar party. He loves movies. He and his wife still watch movies together. He, of course, focuses on listening to them.

For my final question I asked, “If you knew you were going to lose all of your sight, where would you go in the world? What do you want to see?” Lauren settled on going to Patagonia. Maria said “if I knew I was going blind in a month, I would think I would want to see myself in a wedding dress, what I would look like if I were to get married.”

During the conversation, we came to the realization that we all love to dance. They invited me to their dance class a few days later. Unfortunately I was not able to make it. However, I will see them soon in Colorado for the VISIONS2014 conference and dancing will be involved!

The number one question people have asked about my travels is, “What was the best place you visited?” I have been to many great places, it is hard to say what was the “best”. However, my visit to Ethiopia was the best experience.

Thanks to the following comment left on my Flight4Sight Facebook Page from a Madison, Wisconsin acquaintance who works with the State Department, I was offered a unique opportunity to visit Addis Ababa, Ethiopia:

My visit to Ethiopia’s capital involved a range of challenges. I experienced missing luggage, stomach pains, hearing issues, language barriers, and so forth. Regardless, what I learned and experienced in my first visit to Africa was incredible.

Before my Flight4Sight campaign started, I was strongly encouraged by a friend (thank you Carlos) to contact my doctor and load up on shots. The nurse asked me where I was going. It was not very clear at that point (a la Facebook was deciding). She did not want to give me a Yellow Fever shot if I was not going to places where I needed it. I did not argue. Sure enough, about three weeks later, I was in the Dubai International Airport about a half hour before boarding, debating whether I should use my nonrefundable ticket to travel to Ethiopia where I might need the Yellow Fever shot.

Dan and I were feverishly (no pun intended) messaging back and forth trying to figure out if I should come to Ethiopia. We could not determine if I would be able to leave Ethiopia had I not received the Yellow Fever shot. We were perplexed, because the CDC website indicated that I needed to have the vaccine in my system for ten days before I entered other countries after being in Ethiopia. My next destination was Spain. After exhausted online searches by multiple people, we decided I could go to Ethiopia without the shot. A key reason was that I was not going to be anywhere near where Yellow Fever was a problem.

Upon arrival, I was met by Dan at the airport. He was a very welcome sight after multiple arrivals at airports with little idea where I was going. It was a break from traveling alone. Dan has been a friend of the family for 15 years, so I was in good hands.

An important part of my mission was to learn about vision issues around the world. Ethiopia faces one of the world highest rates of blindness and low vision, affecting approximately 4% of the population. On my first day, I visited the Ethiopian National Association of the Deafblind. I met with a group of people, including its director, Roman Mesfin. I discussed my mission. They were eager to tell me about what they are accomplishing. They were excited to learn the US Embassy directed me to them. We talked about their focus which is to identify deaf/blind people, bring awareness to the Ethiopian community, and to help children with deaf/blind issues develop life skills. I met with some of the children. I listened to the story of one blind girl, who was unable to walk when she came to the center a few years ago. Today, she is walking on her own. The organization takes in children from various locations around the area. It’s facilities are rundown, however the people in charge are passionate and dedicated. They talked about their need for additional resources to expand their work. This was a prevailing theme during my stay in Addis Ababa.

On the second day, I visited Retrak. They are an organization that inspires street children to have a better life. This was a change from my vision related focus, yet still very interesting. Children leave their rural homes in search of work in the city. However, they are often faced with fewer opportunities than promised and are left to brave the streets begging and stealing to survive. Retrak takes children off the streets and teaches them skills to succeed in the real world. Along with Broads Abroad Addis Ababa (a group of expatriate women), I received a tour of the facilities and met some of the children. One child had been on the streets for 9 years before he came to the program. Once again, I was impressed with the administrator’s passion.

On the third day, I went to the Addis Hiwot Center of the Blind. I met a gentlemen named Ato Mekonnen. He has been completely blind since he was a child and spoke excellent english. We talked about all sorts of issues. It is a tremendous challenge for those who can see all of their life and suddenly lose this sense. Individuals can fall into a tailspin of psychological challenges and become family dependant. Some families may not be able to support them and people with sudden vision problems often end up on the street. This is especially difficult for those living in rural areas.

The idea of a family neglecting you because of blindness is difficult for me to understand. It is different from the support I received dealing with my challenges.

From the moment I was diagnosed my family has been supportive. Indeed, my
father has gone so far as to be an active board member of the Foundation Fighting Blindness, which is the nation’s largest organization supporting retinal disease research,

The visit with the Hiwot Center also involved individuals from the US Embassy, including my friend Dan. We discussed the history of the Hiwot Center and the USAid’s involvement. We talked about the challenges for Braille textbooks. Ethiopia has multiple languages and a limited power supply to run the Braille machines. Another interesting yet frustrating thing we talked about was that blind people have been denied access to music classes at a local school for over 40 years. He talked about the challenges to even protest this because they would be reprimanded. Organizations with more than 10% aid from the US are not allowed to protest.

On my fourth and final day in Ethiopia I visited the Sebeta School of the Blind. Between accents and language barriers, communication was tough. Moreover, I had been dealing with a busted hearing aid. I relied heavily on my iPhone recording app and for transcribers to be able to write out what was said. Nonetheless, my visit to this school was the experience that touched me the most.

I met a gentleman named Bultosa Hirko. Mr Hirko is the dean of the college for the Sebeto School of the Blind. We talked about the grade school (grades 1-8). It has over 300 students. Most of them are totally blind. They arrive from all over the country and some live on campus. While the school is publicly funded, it has a wide range of needs which exceeds what the government can provide.

The schools needs ranged from canes, tape recorders, braille stylus tools, new computers and updated software. They deal with computer viruses and out of date software. They use a program called Jaws, which reads what is on the computer screen. They are currently running a very old version.

Because of the lack of efficient equipment, students have no access to learning math beyond a sixth grade level. This denies them access to certain professions. They are limited to vocations such as nursing, teaching, and the law.

I had the opportunity to talk to some of the students. We discussed internet access. Access to the online world is a challenge for the students to both connect online and be able to get the information they need translated. I asked them, “what would happen if you have access to the internet and everything on there?” They responded saying that the internet could give them access to share their stories. They could access things for their own learning and communicate to get information.

One of the most surprising things to me was the lack of canes. The few that did have what they called a cane, had sticks that were usually too short. Mr. Hirko expressed the need for more canes, especially for the older children so they could explore life outside of campus.

My time in Ethiopia was not full of meetings. I went to an authentic Ethiopian restaurant where I witnessed a wedding celebration, saw some great dancing, and drank Ambo! It is a sparkling water that comes directly from the ground. I drank it all week. Another highlight was a coffee ceremony. Ethiopia is the birthplace of coffee. It was not a bad place to have my first ever cup of coffee.

On a trip to a historical Ethiopian church, I was having a difficult time seeing the paintings. It was very dark for me. To help see the paintings, I looked at them through the camera of my iPhone. I saw them better and clearer. I wonder if this is a sign of things to come? Will I be wearing terminator glasses that will give me a clear digital image of what is in front of me?

My time in Ethiopia was eye-opening. A massive thank you goes to the Swift family. Everything I did and everywhere I went was set up by them. Throughout my stay I had very interesting conversations with Dan and Tracy about their responsibilities with the US Embassy and around the world. They are incredibly passionate about the world and helping others.

I had a very early flight out. I almost didn’t make it. For whatever reason my alarm on my phone didn’t wake me. The cab driver woke me up (thankfully). Once I made it to the airport, my trip to Spain was smooth sailing. I made an Instagram video of the sunrise on the plane during the first leg of the trip from Addis Ababa, Ethiopia to Cairo, Egypt. I made it through Spain’s customs with no questions about a Yellow Fever shot.

From there, I spent the weekend in Madrid visiting old friends and going to a Blind Museum, where they forgot I was in the museum and shut the lights out… Yup. That happened……details to follow.

When I launched the Flight4Sight campaign, I had one planned destination: South by Southwest (SXSW). I have heard about this conference for a few years. I am a big technology and social media nerd. SXSW combined Interactive, Film, and Music for 10 days from Friday, March 7th – Sunday, March 16th. There were over 5,000 events to choose from. It is the conference where Twitter blew up and Foursquare officially launched.

I planned on buying a badge for the Interactive portion of the conference. The rest of the conference looked like fun, but too expensive. One challenge was how I would travel to the conference every day. I was staying with a friend 30 minutes away. Renting a car was not an option and the bus would take up a lot of time. Then something happened that still boggles my mind. Thanks to someone (who will remain anonymous) who saw a comment I posted on Instagram, I received two platinum badge passes. These badges were worth over 3 thousand dollars. This individual wanted to do something nice to support my journey. I was flabbergasted.

Having two passes meant my friend, Chris Colletti, could join me and drive me around. He took three days off from his job at Apple (don’t ask him what he is working on) to go with me. Also, this meant I could stay for the whole conference!

I arrived in Austin, Texas late Friday night from Rome, Italy via Atlanta, Georgia. Despite two incredible Delta flights, I battled some serious jet lag the first few days. I finished most days with the seat back and my eyes shut as my friend drove us back.

Accessibility at the conference was phenomenal. There was a separate registration booth to deal with ADA (Americans with Disabilities Act) issues. I learned later that I could have a plus one with me. This is a person who does not need to purchase a pass as long as long as he or she stays with you. This will definitely encourage me to come in the future. The accessibility allowed me to sit front row at talks given by Lady Gaga, Nicolas Cage, and Robert Duvall. The conference involved many other stars. I also listened to Sean “Diddy” Combs talk about his new tv station “Revolt”, Bill Cosby do standup and Tim Ferriss talk about challenging yourself. Tim Ferriss is the author of Four-Hour Workweek. It offers a thoughtful perspective on how to live your life. It focuses on your work life and whether it is right for you. Finally, the most sureal sighting was Edward Snowden. He was live (via Google Hangout) discussing all things privacy and NSA.

While waiting in the accessibility line to see Bill Cosby’s stand up, I met Will Lowry. He is a blind writer who was at SXSW for the second time. He is a super nice guy. We had the chance to sit down and interview each other. I will be reporting about this in a future blog.

The conf erence was not all about stars. I was primarily there for social media talks. I was reminded of certain principles. One: “Content is NOT king”. Social Media is “social”. At the end of the day, we should be most focused on engaging people. The second principle involved “authenticity”. Nobody can do Social Media better than the subject itself. I sat in on a few sessions about social media and music. If you are a current or future rock star, your most effective social media strategy is to do it yourself. Fans want to see the real you. Likewise, this can be applied across many sectors, but who doesn’t want to be a rock star?

Another great experience that happened was the mentorship I received. A big challenge at SXSW is the sheer volume of events and choosing which to attend. Also, you need to make sure, for some events, you arrive enough to get in.

One evening, I was unable to attend a certain event. You never want to waste opportunities at a conference where there are so many great events and people to meet. I noted from the SXSW conference schedule there were mentor sessions going on. I sought a mentor. I was super fortunate to talk to Ligaya Tichy. She is an Angel Investor and normally talks to people that are starting companies. I nervously approached her. I talked with her about my campaign and asked her how I could keep it going. She offered great advice. Her best advice was when I stop traveling, to sit down and start sharing what I have done and to seek out new contacts. I was interested in her previous involvement with Airbnb. I inquired with her about how I could get it involved as a partner on my journey. If I keep on my journey, I will need some financial help. I would LOVE to partner with Airbnb. During our discussion, the idea of putting sponsor stickers on my cane came up. My cane could be like a Nascar with sponsors. Stay tuned…

The stars just kept coming. This year, for the first time, Apple brought the iTunes Festival to SXSW. They hosted a series of concerts. I was lucky to win a lottery for free tickets to three of the five concerts they held. Highlights were seeing Pitbull, Lady Gaga, and Keith Urban perform. This was the cleanest concert experience I had ever been to. Everything was so nice. It was full, but didn’t feel crowded. Instead of people in yellow jackets running the event, there were Apple employees coordinating everything and even cheering when we left the final night of the festival. What more can you expect from something run by Apple?

The last night in Austin I went out with my friend and his family for dinner. I was exhausted and debated whether I should even go to Chile. SXSW was overwhelming, I learned so much. I was surprised to realize I was about to spend my tenth night at their place. The conference went by so fast. I happily paid.